1. See the 'News in Brief' from w/c 12th August, by clicking here, Guest.
    Dismiss Notice

David Tuller: Trial By Error: Some Thoughts About NICE

Discussion in 'General ME/CFS News' started by Kalliope, Nov 19, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,135
    Likes Received:
    22,057
    Location:
    Norway
    Some thoughts about NICE

    In fact, a robust debate about ME/CFS treatments rooted in scientific principles would be welcome, since such a debate has been largely absent in the UK. But it would require the NICE committee to include, in addition to a group of apparent GET/CBT proponents, a comparable cohort of biomedical professionals with some knowledge of clinical trials—that is, experts capable of rebutting claims of treatment effectiveness that exceed the evidence. The current list of committee members seems slim on that front. NICE should address this apparent discrepancy if it has any hope or expectation that the new guidance might prove credible and acceptable to a broad audience of clinicians, patients, care-givers, and others.
     
    Dolphin, Philipp, TiredSam and 33 others like this.
  2. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,620
    Likes Received:
    30,491
  3. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,150
    Likes Received:
    26,090
    I'm not sure what I think about the NICE process, I think I'm feeling more negative about it than Tuller tbh, but I think that blog does a really good job of summarising lot of the issues surrounding the NICE review to people, and therefore works as something that could help introduce people to the whole ME/CFS/CBT/GET controversy.

    "In fact, these GET/CBT proponents have a formidable job. They need to convince the rest of the NICE committee that open-label studies with subjective outcomes can provide reliable data—even though these studies cannot do that."

    I fear that standards are so low in UK medicine that this is a far from formidable job. When they're stacking he committee it could be a cake-walk.
     
    Dolphin, MeSci, rvallee and 16 others like this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,255
    Likes Received:
    27,660
    Location:
    UK
    Very odd comment from EG......what's that all about?
     
    MEMarge, rvallee, John Mac and 12 others like this.
  5. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    983
    Likes Received:
    8,299
    EG.
     
    TiredSam, Hutan, EzzieD and 5 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    14,766
    Likes Received:
    79,724
    Location:
    UK
    Thank you for this @dave30th. Will you be sending it to NICE?
     
    EzzieD, ladycatlover, MEMarge and 5 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,620
    Likes Received:
    30,491
    Ellen Goudsmit
     
    ladycatlover likes this.
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    4,620
    Likes Received:
    30,491
    What indeed.
     
    ladycatlover likes this.
  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    605
    Likes Received:
    3,018
    I have pitched in and asked EG some questions!
     
  10. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    983
    Likes Received:
    8,299
    Notice I didn't use a question mark.

    Q: Very odd comment from EG......what's that all about?

    A: EG.
     
    Art Vandelay, Barry, TiredSam and 6 others like this.
  11. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    4,150
    Likes Received:
    24,957
    Well done @Suffolkres. You raised some excellent points in answer to a very vague criticism.
     
    NelliePledge, EzzieD and MEMarge like this.
  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    493
    Likes Received:
    4,434
    Location:
    Toronto
    Hardly a coherent statement from someone with her education.

    At best, she's an agent provocateur - either by choice or disorder - and her comment of unpacking David's approach is meant to distract from the real issues of NICE.
     
    EzzieD, Snowdrop, obeat and 5 others like this.
  13. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    162
    Likes Received:
    1,815
    Careful! Ellen doesn't like being asked questions, she regards them as harassment just like certain other psychiatrists.
     
  14. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    1,793
    Likes Received:
    17,891
    Is Ellen sour about CBT/GET being dismissed entirely?
     
  15. andypants

    andypants Senior Member (Voting Rights)

    Messages:
    1,129
    Likes Received:
    9,910
    Location:
    Norway
    From her twitter account I gather she doesn't think anyone who isn't trained in a specific field themselves can criticize it. So, not trained in CBT, not allowed to voice criticism.
     
    EzzieD, ladycatlover, Atle and 4 others like this.
  16. wdb

    wdb Senior Member (Voting Rights)

    Messages:
    169
    Likes Received:
    1,409
    Location:
    UK
    Well I can't figure it out

     
  17. Andy

    Andy Committee Member & Outreach

    Messages:
    7,066
    Likes Received:
    52,497
    Location:
    Hampshire, UK
    Given that Ellen wasn't able to win the war using her tactics, why would we want David to repeat the same mistake? Why would we want to repeat it?

    Same goes for Erik Johnson who has been trying to give David a hard time on Facebook. They, along with a number of other "advocates", can't seem to accept that others are making progress via different methods to their own, and therefore they seem to think that they should be working to undermine those more successful.
     
  18. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    1,957
    Likes Received:
    13,382
    Does to "gove up" mean to commit some unspecified act of treachery?
     
  19. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    963
    Likes Received:
    10,048
    Location:
    Mid-Wales
    Well if she does insist on blocking the "new kids", we won't ever be able to listen!
     
    MEMarge, NelliePledge, EzzieD and 3 others like this.
  20. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

    Messages:
    1,678
    Likes Received:
    12,873
    I'm not trained in military strategy, but I can confidently say that walking slowly towards an enemy while singing 'here we are, come and get us' without any cover and weapons, is not a good military strategy.

    Is she trained in David's speciality? ;)
     
    MarcNotMark, Daisy, MEMarge and 7 others like this.

Share This Page